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Poor results after second revision surgery for coninuing infection

Hi, I hope to get some help with this. My one twin daughter has been infected by P acne and after the first surgery new hardware was put in. Second surgery found alot of infection and hardware was removed. She now looks worse than before first surgery. Waht are her options. What are the names of national specialists we could try to take her too. We had one consult but he said medical records never arrived. I didn't like the sound of that. Much trauma for my daughter physically and emotionally. Please any thoughts would help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hi, I hope to get some help with this. My one twin daughter has been infected by P acne and after the first surgery new hardware was put in. Second surgery found alot of infection and hardware was removed. She now looks worse than before first surgery. Waht are her options. What are the names of national specialists we could try to take her too. We had one consult but he said medical records never arrived. I didn't like the sound of that. Much trauma for my daughter physically and emotionally. Please any thoughts would help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Oh wow. I am so sorry.

Forgive me but I am not understanding something... this is NOT an antibiotic-resistant bug, yes? I mean they can knock out antibiotic resistant staph in most cases and they can't knock out a NON-antibiotic-resistant bacterium?? My mother contracted antibiotic-resistant staff while in the hospital but they eventually knocked it out with vancomycin I believe. I am not understanding why they can't knock P. Acne out in your daughter.

I think you need to find a top ID guy who will work CLOSELY with the surgeon. Linda will know but I think they will want to get rid of the infection COMPLETELY and then put in new implants. Don't lose hope... this can't possibly be insoluble.

Find the answer. You can do this.

Good luck.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

Much trauma for my daughter physically and emotionally. Please any thoughts would help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Your daughter will take at least some clues from you. You simply have to approach this in a take charge, solid way. There should be no doubt in your mind that you will solve this (because you will). Your daughter must see you walk this walk.

With my kids I took the approach that we have gone through the correct steps, reasoned everything out, thought it through completely. They knew I had life saving emergency surgery twice. They knew I would be dead twice over absent surgery. This places surgery in a good perspective for their particular cases though I never put it in those stark terms. Maybe they sensed this would kill them without surgery on their own.

I think this carried over to their attitude that they were going to ready themselves and step up to the plate which they did as all kids do. The second kid of course had a huge advantage having seen the first kid go through it. But my point is they will cue off you. You need to step up to the plate and stay there.

There is no reason you can't solve this. You will solve this. Your daughter needs to know you will solve this.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

Hi, I hope to get some help with this. My one twin daughter has been infected by P acne and after the first surgery new hardware was put in. Second surgery found alot of infection and hardware was removed. She now looks worse than before first surgery. Waht are her options. What are the names of national specialists we could try to take her too. We had one consult but he said medical records never arrived. I didn't like the sound of that. Much trauma for my daughter physically and emotionally. Please any thoughts would help!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Who is taking care of her now? Surely the doctor that did the surgery must still be in charge of her care? An infection isn't something that I would think they would just let go. Is it that you are not happy with the care she is receiving and are trying to find a new doctor in the meanwhile? I'm guessing (and that's because I'm not in your shoes) that I would do like most of us here and keep her getting her treatment where she is at while I searched the heck out of the internet to find a doctor you trust. Pooka1 gave advice to keep strong for your daughter. Children do pick up on how the parents feel. If you are going to freak out or break down and cry, do it away from her. If you are strong and confident, so will she be. Best wishes for your entire family. I hope you find the doctor you are looking for. Just remember, infection can happen with any surgery, so it may not be the doctor's fault. But like you, I would want the best doctor to help clear this up, too.

Sometimes we get rocks in our roadway. We can look at them one of two ways. There's a rock in my roadway, now I'm stuck. OR there is a stepping stone that I can climb and find a new and better path. I hope this becomes a stepping stone for you and your daughter, so that she doesn't fear her next sugery after the infection is gone. Your optimism will rub off on her.
Best Wishes ((((HUGS))))

Thanks and Update

Tahnks for all the support!!!!!!!!!!!!!!! We are trying to be calm and collected. I think part of the problem is my daughter's stoicism. The other twin was complaining of sport injury pain and meanwhile her twin was filling up with bacteria. We didn't find out about infection until two days before her second surgery. It had been delayed because of 16 year old b-day and driving along with school final exams. She was really in bad shape after that and we moved up the date because she finally was admitting how bad the pain was.

New hardware was placed in despite infection which has been tried. ID wanted it out as soon as they saw her. We didn't know which way to go.
There was an upcoming vacation that they had delayed before for 1st surgery and the year before so she was determined not to complain at all.
We could have pushed for surgery but my husband was afraid of a 4th surgery or possibly 5th. So we crossed our fingers. It didn't work.

ID wise she has been on IV antiobiotics full spectrum for 7 days with oral low level anitiobotic now. Essentially, the infection was never stopped.She had IV and oral before during after second surgery. So she has theoritically been carrying P acnes since late October. Osteomyletis is a concern.

So ID is worried about healing because of anemia and food intake. Ortho is just worried.Not really friendly with each other.

Her back continues to get worse and is more curved than before surgery. Pain is an issue. She has double the pain meds. Has complained of level 10 but then denied when I called the nurse. Kind of snarky. But I think she was she just denied. She never cries, never complains alot. She is starting to do that now today. Also complained last night of worried about being able to sleep and breathe. Again later on the snarky denial.

I know another surgery is indicated after infection which will be problematic since the recent blood cultures never picked up P acnes. So it will be a guessing game.

So we will have time to get a third consult. She is considered a complex case.Where are the premier Scolliosis Centers? Our doc trained at one but I would like to get a well established clinical expert not just one who publishes.
Thanks again for the comments. I really have few parents who understand. One set went with another doc with great results, another is going with our doc but hasn't had surgery.

Go to the Scoliosis Research Society and do a physician search there. They have strict guidelines as to who can qualify to be one of their doctors. I hope this helps. This is how I found my scoliosis doctor. I also found a doctor for my neice, who lives in a different state than me. I know what it's like having a "snarky" daughter. Mine is the same way. Best wishes to you all!

I think you might want to consider your daughter senses or sees the anguish this situation is causing you and is trying to spare you. That is just my impression from what you write.

What is needed in my opinion is a "can do" attitude where you start with the FACT that you will solve this and then set out the steps to accomplish that.

It sounds like a rough road with pain in the mean time. This is a big issue in my opinion that can sidetrack you. Is the pain from the surgery, the infection, or the lack of instrumentation and subsequent progression?

I think you need to address the pain immediately and simultaneously with the infection then the fusion and line up the experts to help you with that if that is the correct course.

Please ignore these comments if they are off the mark.

Last edited by Pooka1; 04-25-2010 at 12:13 PM.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

twinsmom

Having been in this situation myself I understand how desperate you feel and I was making decisions for myself not my child which is even harder. Since you live in the midwest my doctors are too far, but I can tell you the process. My surgeon, Dr. Lonner, contacted the ID doctor Dr. Brent Wise, both in NYC. I was hospitalized for 14 days with a picc line getting Vancomycin and Rifampin IV. My sed rate and CRP levels were closely monitored and they allowed me to be discharged on IV therapy for 2 more months checking my blood levels every week. Then I was to take Clindamycin by mouth for 2years!! I only made it for 1 year because of various side effects and am still having bloodwork done regularly to check the CRP and sed rate. It's been 9 months off antibiotics and my bloodwork is normal but I have been told the bug can lie dormant for up to 2 years. Both doctors consulted with each other and I visited my surgeon to learn more about the surgery. His plan was to remove the hardware, treat the infection for 3-4 mos. until clear and then replace the hardware. This is still the plan if the infection ( which is resistant ) returns. So I am waiting and hoping everything will turn out OK but it has been very hard for me as an adult and for a teenager I imagine even harder. It sounds to me as if you need to step back, be confident in your doctors and formulate a plan. I know having this plan in place gives me the courage I need to get through.
Good luck. I hope this has been helpful.
Diane

Thanks all for your comments!!!!!!!!!!!!!. It's been hard because of the identical twin issue. My daughter MG has been upset and I think having suirvior's guilt. She has had wonderful support at school and with friends.She wants to be involved in everything and has been very helpful at appointments.MA in a period of a few days has developed kyphosis or the term juvenile osteochondrosis of the spine. Didn't see defination this until after the visit.
It is worse than before the first surgery.
She is on oral antiobiotics after a week of IV. P acne is rare and it is questionable if it can become resistent. It also can be latent so my other daughter may have it some day. As with the last message, surgery needs to wait until ID says okay.
We actually are doing okay with support. I think my only issue is knowing when and when not to call. She was so sick after the second surgery and ID and ORtho were drawing lines in the sand about treatment. I get scared to call and bother them. MG denies alot and the ortho doc and nurse along with me have to guess. At first she never talked at all at visits.
So has anyone heard of the Hospital of Special Services for a consult?

Thanks all for your comments!!!!!!!!!!!!!. It's been hard because of the identical twin issue. My daughter MG has been upset and I think having suirvior's guilt. She has had wonderful support at school and with friends.She wants to be involved in everything and has been very helpful at appointments.MA in a period of a few days has developed kyphosis or the term juvenile osteochondrosis of the spine. Didn't see defination this until after the visit.
It is worse than before the first surgery.
She is on oral antiobiotics after a week of IV. P acne is rare and it is questionable if it can become resistent. It also can be latent so my other daughter may have it some day. As with the last message, surgery needs to wait until ID says okay.
We actually are doing okay with support. I think my only issue is knowing when and when not to call. She was so sick after the second surgery and ID and ORtho were drawing lines in the sand about treatment. I get scared to call and bother them. MG denies alot and the ortho doc and nurse along with me have to guess. At first she never talked at all at visits.
So has anyone heard of the Hospital of Special Services for a consult?

Hi...

The stuff they do to the spine during scoliosis surgery, preparing it for fusion, can cause both an increase in scoliosis and kyphosis.

I've been following your thread and sympathizing from afar for your travails and those of your daughters (Sometimes I wonder who suffers more from a child's pain - child or mother!).

I can't imagine the most experienced child psychologists giving you better advice and in just the right voice, than you got from Pooka. Clearly, she has been taught much by her own pain.

It sounds like living hell for all and I'm very glad you have great support there.

You do here too, FWIW, and I hope you will be able to keep us posted as events unfold. What a nightmare! But one you WILL wake up from, godwilling. It's true - your attitude can have an immeasurable effect on your children. Often attitude translate into outcome.

Not that this is all on your shoulders! That would be too much to bear. But your strength - if necessary, even just the appearance of strength - can sustain your daughters. Sounds like your instincts here have already guided you well!

Losing the thread but not the thoughts

I always have a hard time finding this thread! Maddie had the 3rd surgery and did well. It was a long and hard wait. But after reading more research papers spontoneous drainage is not unusual and the need for debridement and irrigation usually necessary. P acnes is slow growing so that was the scariest part in that she had it in her. But no ill effects that way. She did look like she had been run over by a semi. She video her preop experience and the old hardware is on the net. She did very well post op. One sad thing, her back is much worse than before. Which was the Ortho 's concern against taking out the hardware. So we will see him at the end of the month and plan for what is next. She is bonded with him and doesn't want to waste anytime at other medical facilities. I think I have found my peace I was looking for. I have great hopes that this will be the last. Mary

I always have a hard time finding this thread! Maddie had the 3rd surgery and did well. It was a long and hard wait. But after reading more research papers spontoneous drainage is not unusual and the need for debridement and irrigation usually necessary. P acnes is slow growing so that was the scariest part in that she had it in her. But no ill effects that way. She did look like she had been run over by a semi. She video her preop experience and the old hardware is on the net. She did very well post op. One sad thing, her back is much worse than before. Which was the Ortho 's concern against taking out the hardware. So we will see him at the end of the month and plan for what is next. She is bonded with him and doesn't want to waste anytime at other medical facilities. I think I have found my peace I was looking for. I have great hopes that this will be the last. Mary

This good news. I think you have turned the corner. This will be solved.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

I had fusion in May 2002, which resulted in a deep staph infection. Had surgery to clean infection in June 2002 and prescribed antibiotics for several weeks. After completing the antibiotics in July 2002, within a couple days I was having extreme abdomen pain and went to hospital, and found out infection wasn't gone. They did another surgery to clean and put me on IV antibiotics for 4 months, followed by oral antibiotics until April 2003. In April 2003, I stopped antibiotics and within a week, the infection returned as spinal meningitis and nearly killed me. It turns out that the infection was sticking to the metal hardware and it was impossible to kill off without removing hardware. The problem is that they can't remove hardware until spine is sufficiently fused, which takes about a year. So, in April they did surgery to remove all hardware. After hardware removal, I had 4 weeks more of antibiotics, and never had any problems with infection afterward. I do have some ongoing, chronic back pain (treatable with exercise and medication), most likely as a result of all of the repeated surgeries and infection, but have not had any other problems since. I do have a few vertebrae that didn't fully fuse, and they've talked about possibly re-fusing at some point, but it is worst case scenario due to high chance of infection if they re-implant hardware. The doc said I'd probably have around 50-50 chance of infection if they re-implanted.

I hope my story helps give some information to help you make your decisions. Its impossible to ever really know what is right or wrong. Just use whatever information and advice you can to make the best decision at the time. I often regretted having the initial surgery, due to all the pain and trouble I went through with infection, but then I realized that I don't know what would have happened without surgery... it could have been a more painful experience, and regret doesn't help anything anyway, so I just have to live with and fine comfort in the choice that I made. Good luck.